Sotos Syndrome
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What is Sotos Syndrome?Is there any treatment?What is the prognosis?What research is being done?OrganizationsWhat is Sotos Syndrome?
Sotos syndrome is a rare genetic disorder characterized by excessive physical growth during the first 2 to 3 years of life.
The disorder may be accompanied by mild mental retardation, delayed motor, cognitive, and social development, hypotonia (low
muscle tone), and speech impairments. Children with Sotos syndrome tend to be large at birth and are often taller, heavier,
and have larger heads (macrocrania) than is normal for their age. Symptoms of the disorder, which vary among individuals,
include a disportionately large and long head with a slightly protrusive forehead, large hands and feet, hypertelorism (an
abnormally increased distance between the eyes), and downslanting eyes. Clumsiness, an awkward gait, and unusual aggressiveness
or irritability may also occur. Although most cases of Sotos syndrome occur sporadically, familial cases have also been reported.
Is there any treatment?
There is no standard course of treatment for Sotos syndrome. Treatment is symptomatic.
What is the prognosis?
Sotos syndrome is not a life-threatening disorder and patients may have a normal life expectancy. The initial abnormalities
of Sotos syndrome usually resolve as the growth rate becomes normal after the first few years of life. Developmental delays
may improve in the school-age years, however, coordination problems may persist into adulthood.
What research is being done?
The NINDS supports and conducts a wide range of studies which focus on identifying and learning more about the genes involved
in normal brain development. The knowledge gained from these fundamental studies provides the foundation for understanding
how this process can go awry and, thus, may eventually give clues to understanding disorders such as Sotos syndrome.
Select this link
to view a list of studies currently seeking patients.
Organizations
Prepared by:
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National Institute of Neurological Disorders and Stroke
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Last updated February 14, 2007
